Celestina Marques Gonçalves. Cord Traction Syndrome. Arnold Chiari I Syndrome. Idiopathic Scoliosis. Polydiscopathia.

Published by ICSEB at 10 October, 2013

Surgery date: July 2011

My name is Celestina Marques Gonçalves. I live in Brasil-Porto Alegre/RS. Today I am a very happy person, full of hunger for life. I had been suffering during many years from strong head and neck aches, with migraines as a diagnosis, and also problems in my cervical spine had started to appear. In November 2006, I travelled to China for an internship in traditional Chinese medicine acupuncture and I ended up in a lot of pain and was not able to finish the course. The pain was blocked with acupuncture, but when I came back to Brazil, after 30 days, I had another attack like the one in China. I made the stress and many hours of travel responsible for this. From that moment onwards, I started to have crises more frequently, more or less every 3 months. They took me to the hospital, they gave me medication and I would be well for some 3 months and then another crisis would come about, stronger every time. I discovered a drug that you put beneath your tongue and the pain would go away within a few minutes.

In 2009 I started to have headaches almost daily. I had massages and acupuncture that alleviated the symptoms. Later I started to have different symptoms, but I never made a connection with the headache crises. In 2010 I started to have dysphonia and even aphonia. I am a therapist and acupuncturist and I teach classes and courses in professional education – many times I experienced voice alterations or even was left without voice when teaching my classes. I quickly started to look for a specialist, but he sent me to other specialists when he wasn’t able to find a cause. They never found anything that justified my voice trouble. During the same year and quite quickly other violent symptoms/crises of pulsating pain in the neck appeared, pressure on the head, blurry vision. The days went by and the pain crises got worse until I wasn’t able to sleep anymore. I spent my nights stretching and moving around as if I was wearing a too tightly fitted dress.  I started to search for a way to sleep that would alleviate me – sleeping with half my head hanging from the bed would lessen the pressure I felt inside. In the course of some weeks I felt clearly that the symptoms were getting worse. I started to have nocturnal apneas – I slept sitting up. Many times during the day I would feel short of breath. Later I started to have symptoms of cardiac alterations. I spent some months like this, going to see doctors of all possible specialties. I saw 8 doctors from 5 different specialties and they didn’t find anything in all the different tests they conducted. At the moment I only knew that had a problem on the cervical area and that they did not recommend any kind of surgery. The tests that the doctor based his diagnosis on already showed the Arnold Chiari Syndrome (only that I saw that 10 years after).

One day I dreamt that I was having a brain scan. It was a Monday. When I woke up and got up, back then I was crawling, and called a neurologist, the first of seven that I consulted with. I asked for a prescription for a MRI, he examined me and said that there was no reason to have one, because I was fine. I insisted on getting the prescription. The next day I was already getting the scan and that same week I was already coming back to the neurologist with the diagnosis Arnold Chiari I Syndrome. He referred me to another doctor, and that next one yet to another one, etc. There was seven of them and only one of them had done a craniectomy before. He explained how it was done and what the risks were. I decided not to go ahead with the surgery – risk against risk, I chose the risk of sudden death by the disease itself. The next week matched with my son going away to Canada for a year to study. I decided not to say anything to anyone until he got back. I then ended up telling my husband. In few days I was doing worse every time. I started to loose strength in my legs and sphincter control. During the crises I was no longer able to do my job, walk, drive…. I would move five steps and I would feel I was out of breath and tired in a way that required me to lie down. I didn’t know that all this was due to my back problems My daughter, very suspicious of what was going on (I tried not to see her personally), finally found out what was going on when she pressured me, that it was due to a little known congenital disease and that the only solution was a high risk surgery. My daughter was desperate. AS she couldn’t accept the reality, she started to research on the Internet, looking for a way out of the “terrible” situation of pain, suffering….

Three days later she came to my house with information stored on her computer, she researched, she contacted other carriers of the syndrome, contacted with communities, groups, patients operated by Dr. Royo in the clinic in Barcelona, Spain. A renewed hope. A light. We received the instructions on how to get a diagnostic orientation at distance and we sent all the medical files for Dr. Royo to study. How stressful!!!  We received the information that I might be a candidate for the surgery, to be honest we all remained nearly suspicious because what Dr. Royo was saying seemed unreal compared to the lack of information and the unawareness of the neurologists in Brazil-Porto Alegre. I started to renew my hopes to walk again, breath well sleep, speak, and control the sphincters…. It was a very important time period. I received help from many people, reiki, spiritual support….

I decided to do the surgery. I went to Barcelona in July 2011. I had the surgery of the sectioning of the filum terminale ligament and the day afterwards I walked out of the clinic without pain. I stayed in the city for ten days, going on touristic visits without pain. When I returned to Brazil I realized that also the pressure I had had  in my head had disappeared after flying on the plane. Dr. Royo also indicated a surgery of the cervical spine for the three disc herniations that I had. I had that one in Brazil, they put in three plates and eight screws, five months after the sectioning of the filum terminale surgery performed by Dr, Royo. After the cervical spine surgery, the neck movements improved a lot, the pain went away, and also the sensitivity in my fingers came back. I am very grateful to Dr. Royo.

When I returned from Spain, I went to see the doctors and I told them that the symptoms I had were associated to the syndrome and that is why they could not diagnose correctly with lung and hearts, endocrine, ENT, renal and eye tests. This helped immediately to diagnose a nine-year-old boy, who was hospitalized to study his symptoms.

I really hope to be able to help those who feel unsure about the procedure. I recommend the kind, serious and efficient work carried out by Dr, Royo.

Thank you.

Celstina Gonçalves

E-mail: [email protected]